What happens when patients meet rare disease researchers, and create a dedicated community, support research, and most of all, have fun doing this? Meet TAPS Support, a unique and dedicated group of individuals who work together towards an incredible common goal.
What is Twin Anemia Polycythemia Sequence (TAPS)?
Twin Anemia Polycythemia Sequence, or TAPS is a rare disease affecting twins sharing a placenta. Affecting just 3-5% of these twins, in either its spontaneous form or after laser surgery for Twin to Twin Transfusion Syndrome (TTTS) , TAPS has severe short and long-term outcomes. In post-laser TAPS, 26% of donor twins are at risk of perinatal mortality. In spontaneous TAPS, donors are at risk of deafness and neurodevelopmental impairment.
TAPS is often confused with TTTS, despite them being distinct and separate diseases.
Due to a lack of awareness about the risks of this disease, as well as out-of-date screening guidelines and a plethora of myths, TAPS is not routinely part of screening protocols for monochorionic twins, despite more than a decade and a half of research.
Who are the TAPS Support Foundation?
We are a not-for-profit foundation run solely by volunteers. Learn more about our team and their roles here.
We want to continue research into Twin Anemia Polycythemia Sequence (TAPS) and related conditions and support patients diagnosed with these diseases.
Our passion for raising awareness of TAPS also extends to raising money for research, helping families connect to each other, and the latest findings. From our webinar series, our annual International TAPS Day events, and our major fundraiser, The Twin Run, we work together as a unified and dedicated team.
And the best bit is we’re one amazing, passionate, dedicated, and fun team. Our unique teamwork has been recognized in The Times/Raconteur, and more recently, as part of the 11th European Conference on Rare Diseases and Orphan Products as a poster presentation.
The best bit about our collaboration is the fact that together, we’re making a change and having fun doing it.
We are a unique combination of families, researchers, and care providers. Together we are dedicated to breaking down the walls between research and patients, bringing the latest research to diagnosed patients, and ensuring that research continues into TAPS.
TAPS may be rare, but together, we’re going to make sure that families are supported through continuing research and creating a community where stories are shared, and no one is alone in their diagnosis.
TAPS is Real.
Who Are The TAPS Support Foundation?
Our foundation was created to support research into Twin Anemia Polycythemia Sequence, a rare complication of monochorionic twins. Discover more….
Meet The Team
Our team ensures that we’re on top of the latest research, and have a wealth of experience with TAPS and related disorders. Read more…
From project updates to research news, be the first to know. Stay up to date with our news page.
The TAPS Support Foundation partners with organizations with similar philosophies and ideals to our own. Read more…
Projects and Donations
Discover more about our latest projects, and what we want to achieve here.
Support research into Twin Anemia Polycythemia Sequence, and help connect families through donations.
Stay Connected On Social Media
Partnering with twin research projects and researchers is vital for the future of our families